September 28, 2007

The nature of Fibromyalgia is such that I find myself almost phobic about stress and pain. So, in avoidance of it, I’ve probably lost my job.

A few months back, my doctor recommended that I go on leave of absence. I’d had a bad flare, and work was becoming increasingly difficult to deal with. Pain, stupidity (due to the fibrofog), and humiliation (also due to the fog). My supervisor and manager were extremely understanding. At their urging, I applied for short term disability. I went to my doctor, who filled out all of the necessary forms and supplied loads of documentation, but my claim was denied. They said that my doctor hadn’t provided enough information. Insane, considering he sent them records from every specialist that he’s ever sent me to, and every hospital visit I’ve had in recent months. Do they think I’m doing this for fun? Anyway, there’s an appeals process, but I just didn’t have the physical energy or mental fortitude for it. I’m not kidding. Meanness burns me out. Red tape exhausts me. Becoming overly stressed can immobilize me with pain. The system makes you go to doctor after doctor to make your case, but there is no doctor who can cure this. The game exhausts me.

My FMLA ended on the twenty-first, I think. Maybe it was the twenty-eighth. I get confused. When I had my recent lunch with my supervisor, she urged me to appeal. She told me exactly what to do, who to call, what to get my doctor to say. “You have to do it Monday,” she said. “That’s the last day of your FMLA.”

I drove an hour-and-a-half from Columbus to Dayton that day. When I got home, I was laid flat for a couple of days. The exhaustion is indescribable. The pain was enormous. All I can do when this happens is sort of curl into a ball and cry. So, I didn’t call on Monday. Or Tuesday or Wednesday. I did call yesterday because I finally felt strong enough to deal with it, but I started getting the runaround (Them: “You have to call your superivor.” Me: “But my supervisor’s the one who told me to call you.”) and just couldn’t see it through.

I had a severance package, insurance and a job at stake. I blew it.

I’ve been determined to do this my own way, and this is sort of forcing my hand. Self-employment seems like the only viable alternative to all of this. We’ll see how it goes.

September 25, 2007

I hurt. I hurt. I hurt. This is ridiculous. I’ve been in unbearable pain all day long. Less than no energy– it feels like the life has been sucked out of me. Searing pain in my hips, shoulders, legs, and the soles of my feet. I want to cry, but I don’t think I can summon the tears. I’d have to work too hard to get them to form in my friggin’ tear ducts. There HAS to be an explanation for this. There has to be a cure.

And whoever keeps typing “Fibromyalgia is complete bullshit” in the Search Engine Terms should seriously consider getting some semblance of a life. Better still, come live in my body for a day or two.

September 23, 2007

I have the most amazing supervisor in the world. I’m not kidding. I’m not exaggerating. She’s an amazing person– kind and strong and competent. I have a tremendous amount of respect for her.

For the past couple of months, I’ve been on leave of absence due to Fibromyalgia. My supervisor has been with me every step of the way on this– she understands the nature of Fibro, and how it’s changed my mind, energy and body. She sees the guilt, the pain, the depression– all of my warts– and she genuinely cares about me. It’s pretty incredible, considering that this syndrome renders me the Least Valuable Player at work.

We meet for lunch every so often, just to touch base. It makes me so happy to connect with her, and she seems genuinely happy to connect with me. I don’t know how she does it– I cry, explain, update, I give her all the reasons she should just go ahead and fire me– it’s all very depressing. I’ve had to postpone, and once I had to leave early, because I was hurting too much to sit through an entire meal. What a lunch buddy I am. She never gives up on me, though I often give up on myself.

We got together again yesterday, and were delighted to see each other. She was carrying this gigantic bag with her. We hugged and talked, then she handed me the bag and told me that it was from everyone at work.

By the way, I have amazing coworkers too. Overall, they’re intelligent, hard working, fun and kind. Of course there are a couple of snotty, petty ones as well (they make me have high school flashbacks), but two or three bad apples out of a department of 35 is pretty extraordinary.

Anyway, in the bag was a basket. A beautiful basket, decorated by a woman in the department. Inside the basket, my friends from work had placed some of the most thoughtful, personal gifts imaginable. I’ll try to describe some of it:

One coworker, with whom I used to discuss music, put in a CD of a singer she had told me about.

Another, who’d once lent me a movie that I never got to watch, sent a copy of it and attached bags of microwave popcorn.

One, who knows that I love to paint and draw, sent a sketch pad and some pencils.

There’s a woman who works part-time at Merle Norman. She sent a beautiful satin bag with moisturizers, blush, lipsticks, and lots of other girly things.

Scented candles were tucked inside, along with lotions, bubble bath, amazing herbal soaps, novels, puzzle books, a magazine on body and spirit– all sorts of things to keep stress down.

Everyone at work knows that I’m addicted to a particular salad from a particular restaurant. I used to eat one several times a week. Someone gave me a gift card from this restaurant.

Chocolate!

Someone I used to have Tim Horton’s coffee with sent a whole can of the stuff.

A journal.

A beautiful bracelet made of “lucky karma beads,” which is supposed to bring “unexpected miracles.”

They all went in and collected enough money for me to get a massage from this therapist I used to go to but can no longer afford.

I was speechless, and needless to say, cried non-stop. A couple of times, I had to quit perusing all of the stuff they’d put in there, just to collect myself a bit. After lunch, I read all of the cards that people had sent. There was one big group card, then several individual ones. One woman who used to talk to me about her dog (he has a better wardrobe than I do) sent a picture of herself with him. A supervisor had found a card with Desiderata on it, a poem which I have posted on the wall above my (now empty) desk at work. It just had the part that reads:

“Be gentle with yourself. You are a child of the universe, no less than the trees and the stars. In the noisy confusion of life, keep peace in your soul.” Inside, she wrote, “My Dearest Moonbeam, I hope today finds you well. You have no idea how often you are in my thoughts and prayers, sending good healthful energy. I miss your sense of humor and gentle spirit. I hope you don’t mind if I tag along on one of your future lunch outings. Love ya girlie– feel well.”

This made both my supervisor and me blubber all over the place.

How can so much kindness exist in the universe? It overwhelms me and fills my heart with joy. I don’t deserve these gifts. This is not false modesty. Let me tell you, there are people in my department who have overcome obstacles a million times greater than mine. Some have illnesses. A few of them go home to dying spouses, renegade children, and elderly parents that they have to care for. My supervisor confided that as a single mom, she’d raised a disabled son. Their strength is inspirational, and my weakness puts me to shame. That they did this for me is inconceivable.

September 20, 2007

I made it to my mother’s house without incident, but today, I’m more foggy that I have been in weeks. It feels like I’m trying to fight my way out of a membrane of some sort. Like my brain is covered in cobwebs, and I can’t seem to shake them off. I tried sleeping, drinking coffee, just rolling with it, but none of these things are working. I promised myself I’d write every day, so I’m jotting this down, but I’m really feeling quite awful today.

No, no! I just figured out what it feels like— it’s like being held underwater, and trying to fight my way back up to the surface.

Here’s what makes it worse: I hate having anyone witness this. My mother’s having company tomorrow, and I’m here in part to help her clean house. But my mind and body are no longer working on anyone’s timetable. I’ll get things done– I always do, but it may be midnight before I’m operational again. This makes me edgy, because I’m so worried about her disapproval. She’s not to blame. She’ll try to understand, but I guess the real disapproval comes from within me. It makes me feel guilty.

I have to quit writing now, because I don’t think this is making much sense. I’ll try again later.

September 19, 2007

Okay, I know you’re not supposed to drink and drive, but lately, I can’t even ride in a car without a little whine. Tom and I drove to the lake a couple of weekends ago. It’s about an hour and a half from here, and as our journey progressed, I could feel burning pain settling into my hips, back and legs. It increased with each mile, and I spent the last half of the drive in tears, arranging my pillow and trying to find a comfortable position. The position I found was on my hand and knees on the passenger seat, facing backwards (“Don’t you DARE laugh at me,” I told Tom). Hey, whatever works. So there I was on all fours, my face near the window, hair blowing crazily in the wind. If I’d had a collar on, someone would surely have mistaken me for a sheepdog.

When we got to the lake, I walked around for a while, and started to feel better. Soon the pain level was back to “simmer.” But these experiences make me almost phobic about repeat performances. Today, I’m driving to Columbus to see my mother, and I’m really afraid of the consequences. I try to think positively about all of this, but there’s never any way of knowing if I’m going to be out of commission for a few days afterward or if I’ll be just fine. I think it’s the not knowing that bothers me most. But hey, that’s Fibro. We’ll see how it goes.

September 17, 2007

Lil Miss recently wrote a post about feeling like a “Fibro Flake,” and it really hit home. One of the hardest parts of dealing with Fibromyalgia for me is that it’s changed my personality and lifestyle. Part of this has just been a natural occurrence, but much of it’s been necessity. I’ve had to pare down my rich, full life until it’s just the core of what it used to be. I can’t explain it to others, and no one can understand it.

With Fibromyalgia, you unconsciously begin protecting yourself–physically and emotionally. Since it’s a double whammy– pain causes stress and exhaustion, stress and exhaustion causes pain, without realizing it, you start walking on eggshells, trying not to do anything that will upset the extremely delicate balance that becomes your life.

I find that I’ve cocooned myself in many ways; I seldom have energy for friendships and family, and though I force myself to get out and “do,” it takes every bit of energy I can muster. Returning a library book becomes a major chore. I’ve become an intermittent person. I’m sure that my relatives whisper about the changes that have developed in me, and my friends have had to accept the fact that I’m not always able to be there. I can go weeks without talking to anyone but Tom.

Emotionally, this wrecks me. I love the people in my life, and we’ve always been direct and honest with each other. The old me would try to discuss all of this with them, try to be “understood,” and make sure everyone was feeling okay about things. But I no longer have the spirit for it. I feel guilty and ashamed, but after many years of trying to comprehend and come to terms with Fibromyalgia, I realize that I have to shield myself against the looks, the whispers, the judgments, and the well meaning but misguided comments. I don’t want to deal with it anymore. I can’t deal with it anymore.

So, I’ll sit here with my mild case of agoraphobia, talk to the people I love when I can, and just try to be accepting of the things going on within me. I’m trying to learn how to gently and patiently tame this beast, but it’s going to be a long journey.

September 14, 2007

Friday’s forecast: Unexplainable aching and burning in hips, legs and right foot. The Doppler indicates mild shoulder pain to the north, with pressure increasing by the minute. 95% chance of whining and griping later today, clearing by this evening. Scattered sleeplessness around midnight, and grogginess by morning. The five day forecast is a mystery.

September 11, 2007

I am learning to deal a little better with the fibro fog (I hate that term- why can’t it be something pretty, like “fibro mist” or “fibro fantasyland”?). When I realize it’s coming on, instead of crying in frustration as I used to, the first thing I do is to warn Tom. This way he’s aware that I’m in space cadet mode, and he stays on the lookout for my keys, my cell phone, and the glasses on top of my head. Also, he can flee, screaming, if he needs to.

If I can rest, I do it. Sometimes, just going back to sleep for a few minutes, and waking up as though the first time didn’t count, helps.

I drink coffee. Lots of it. I don’t know if this is a remedy, I just love coffee.

Stretching helps. Even two minute’s worth.

I write every day. Even bad writing (like this) helps me keep my mind focused on something, and enables me to stay as sharp as a butter knife.

I ask myself a lot of questions throughout the day: Did you take the key out of the ignition before locking the doors? Check. Did you turn off the stove? Check. Are you thoroughly sick of feeling so stupid? Check.

Mostly, when I get this way, I try to give myself a break. I don’t talk on the phone, I try not to schedule big events, sometimes I just zone out and watch a movie or something. I try to be as gentle and nurturing as possible, and not beat myself up with negatives. If I had a friend who was a little slow on the uptake, I’d never scream or grow impatient. So I’m working on treating myself as my own best friend. My own very slow, spaced out friend.

September 10, 2007

I am clumsy and uncoordinated. This has always been the case, although I’d love to blame it on the Fibro. My dad used to call me “Blunder.”

Last night, I fell down the stairs, five of them, and crashed into a piece of exercise equipment. Today, I’m bruised, I hurt all over, and my brain is foggy. Tom says it’s like living with Gerald Ford.

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This is going to sound crazy, and very middle-aged. Let me start out by saying that, in my entire childhood, I never had a stuffed animal. Not one. Maybe a couple of dolls, but that’s it. And I could never understand why my friends had these menageries of them; some even took them to college and had them laid out on their dorm beds. I am not like that. Give me a pillow and some sheets with a decent thread count, and I’m good to go.

Having given you my disclaimer, I have recently changed my stance on this. I was in the hospital about a year ago, and my mom gave me this soft, scroungy looking little stuffed cat. As I was recuperating, I hugged that thing for dear life. When I was well again, I put him on the shelf.

Lately, when I’ve been in pain, and feeling very wah wah, I’ve taken to keeping the little guy handy. What I really want when I get this way is Tom– I want a human teddy bear to hug and comfort me. One day, I had to go crash because I was feeling horrible. I didn’t say anything to Tom, I just went to lie down for a bit and wait for the feelings to pass. I never want to be helpless or demanding, so I don’t say anything. Well, Tom came into the room and saw me lying there, sniffling, he came in and put his arms around me. Like magic, I felt better and stronger.

It’s sort of impossible to have Tom around for this sort of on-demand comfort, so I’ve taken to hugging that little kitty. It truly does help, but he’s awfully small, so I’m on the lookout for a big, soft teddy bear– a surrogate Tom. Try it, you’ll like it.

September 8, 2007

I’ve come to dread the rain and the cold. Just knowing that winter is around the corner is filling me with fear, because as bad as the Fibro’s been this summer, I know from experience that it’s going to get worse.

This is a new phenomenon with me, this weather-phobia. I’m also becoming a little activity-phobic, knowing in advance that a long bike ride or a strenuous day of yard work will do me in. If you knew that every time you walked out the door, a giant lion was going to leap from the bushes and bite you…well, eventually you’d just subscribe to Netflix, make some popcorn, and happily settle in to being agoraphobic.

I refuse to give in to it completely, so I compromise with it. A little less yard work, a shorter ride, canned soup instead of the big dinner I was planning. But the weather, well… I haven’t learned how to control that yet. If I find out, I’ll let you know.

Today I heard the roll of thunder announce an approaching storm. I used to love thunderstorms–the sounds, the blazing lightening, the rain against the windows. Now all I can think of is, “Arghhhhh! More body pain!” And it’s true. The weather makes me ache like crazy, all the way to my bones. This time, however, I decided to get all happy about it. I said to myself, “Oh boy! A thunderstorm! Yippee!” I got a book and curled up on the sofa, snoozed a little, and listened to the beautiful sounds of the great outdoors. I tried everything I could think of to roll with it, and to see if positive thinking and self-nurturing would help. The hardest part was pushing away the programming within me that tells me that I’m lazy and self-indulgent for not “DOING.” I wrestled with that for quite some time, but it’s realizing all of these things that are a part of the process for me.

In the end, I hurt just as much as ever, but it actually did help a bit to keep the dread and fear at bay. Soon, I’ll practice saying, “Minus twenty degree weather! Snowflakes! Yippee!”